Intersex activist | filmmaker | consultant

Growing up intersex – which is a reality for 0.5% – 1.7% of the population – is full of wonderful things! This can include getting lied to about your diagnosis, feeling different than everyone around you, and sometimes undergoing non-consensual “normalizing” surgeries!

What’s more, we often gain an expensive life-long dependency on the medical industrial complex because we’ve underwent unnecessary and non-consensual medical procedures that come with lifelong consequences(/sarcasm).

I was declared female at birth (DFAB) and doctors discovered early on that I had an intersex variation known as Partial Androgen Insensitivity Syndrome (PAIS). This meant that my sex chromosomes were 46 XY, I had two testes instead of ovaries, and my body was partially intolerant to “male” hormones.

Doctors intervened and tried to jam my non-binary body – which contained a mixture XY chromosomes, internal testes, labia, a clitoris, and a shallow blind ending vagina – back into the binary.

Surgeons lied to my parents and told them I would develop cancer if they weren’t allowed to remove my internal testes. After that procedure, they also removed my “enlarged” clitoris, and gave me a vaginoplasty when I was 11, so I could have normal sex with my future husband.

Combined, these interventions left me sad, angry, and confused. I found myself dependent on this country’s broken health care system in ways that were unsafe and financially devastating.

One glaring example of how intersex kids without adequate resources are continually made vulnerable, and then preyed upon by that same broken system, involves my prior search for an intersex knowledgeable endocrinologist.

When I turned 18, my Children’s hospital swiftly barred me from receiving services any longer. On the hunt for a new doctor, I encountered one who ended up taking advantage of my situation.

This doctor told me he needed to perform a pelvic exam before he could prescribe me the hormones I needed for my general well being and bone health.

He closed the door and put on a latex glove before inserting a finger inside of me to carry out his “pelvic exam.”

I clenched the crispy paper covering the exam table and cried as he performed the exam. Afterwards, he gave me some free samples of a testosterone gel, no prescription, and sent me on my way.

I later discovered that what he did was not only unnecessary, but possibly illegal.

After we turn 18, many intersex kids find themselves lost in the medical industrial complex. Sometimes, like in the example I just shared, we can continue to get hurt further by the system.

Unfortunately, I can’t go back and undo what the medical industrial complex did to me, but I can tell you part of my story and share the strategies I’ve found for wellness and healing.

I’m thirty years old now, and have about 10 years of experience under my belt of trying to navigate what often amounts to an expensive, and often triggering, world of medical care in this country.

The following is a list of free and/or affordable tips on making the process a little bit easier for you!

1. Getting Your Medical Records

Before you do anything on this list, try to get your hands on your medical records. You have two options, and neither are guaranteed – but it’s worth trying.

The first option is free, and involves making an appointment with a new doctor who you trust. Afterwards, contact your past doctor’s office and request they transfer all of your past medical records to your new physician.

Once your new doctor’s office receives a copy, request they make another copy for you to have.

Before reading your records, make sure you have reached out to someone you trust – like a therapist or a friend – and come up with a plan. You don’t want to be caught off guard while reading your records with no one to turn to.

There’s a catch with this free method. Since your medical provider will know what you’re up to, they’ll have an opportunity to modify your records.

For instance, if something in the records implicates them in something they’d rather you didn’t have knowledge about, that record could mysteriously vanish.

Alternatively (and this is sadly common), they may just end up telling you that the records are irretrievable. Many intersex people I know could not retrieve their records because they were mysteriously destroyed in a fire.

The second option costs money, but is generally the safer method for ensuring you receive all of your records.

To do this, contact the medical record division of your past hospital, and request that they personally make a copy of your medical records for you.

When I did this, the office charged a certain amount per photocopied page and the total came out to roughly $50. Coughing up $50 for what I believe to be my property was not only expensive, but also felt like a slap in the face.

When I was choosing a Medicaid option, I made sure to choose a provider that covered my hormone prescription (Covaryx) because it’s the most necessary, and expensive, of my current prescriptions.

You can find out what medications are covered by browsing each provider’s formulary. Other things you might want to consider are the therapy and psychiatry stipulations, how much co-pays cost for doctor visits and prescriptions, and whether your current physician accepts that specific form of Medicaid.

To get this process started, regardless of whether your state has accepted or rejected Medicaid expansion, log on to healthcare.gov and make an account to check out your available options.

If you’re eligible for Medicaid, the website will let you know and you will receive a determination letter detailing your next steps.

Getting on Medicaid is wonderful because it will mean that you can most likely get your medications and doctors visits (sometimes even vision and dental) for free!

If you end up not eligible for Medicaid, and unable to get insurance from your employer, you can still use the same website to apply for what’s hopefully affordable coverage.

Pro tip: Start this process as soon as possible. It took me close to three months to get covered by Medicaid after I left my job last year.

3. Getting Set Up with a Primary Care Physician

After you get insured, make an appointment with an LGBTQIA+ friendly physician. A good place to start looking for one is by asking your friends on social media, or googling LGBTQ health centers in your neck of the woods.

If you don’t have access to an LGBTQIA+ friendly doctor, try and get a referral to any doctor from a friend or family member who you trust.

As a last resort, you can contact your insurance provider and search for a physician that’s nearby.

Pro tip: You can search the physician’s name on Google and look to see if they have any reviews. Yelp and Zocdoc can be helpful websites to search for reviews. Note, the majority of doctors on those sites usually don’t take Medicaid.

Or you can use RAD Remedy, which is like a queer Yelp for medical providers, to find a doctor that is sensitive to queer and intersex folks’ needs.

4. Getting Your Hormones

Once you’ve got your medical insurance and have found a doctor, you’ll want to make an appointment with them to discuss your hormone needs. There are over 20+ intersex variations, and each variation requires different care and medications.

This is where that insurance coverage comes in handy. Hormones, both estrogen and testosterone, come in many variations. You can try patches, pills, gels, creams, and injections, just to name a few.

Taking my hormones in pill form is what I’ve found works best for me, but you should figure out what works best for you.

As I mentioned earlier, Covaryx is the name of the medication I currently take, and it’s a small pill that contains 2.5 mg of estrogen and 1.5 mg of testosterone in each tablet.

Another option, especially if you have hella money or great insurance, is to get a specially formulated hormone supplement tailored for your body chemistry by a compound pharmacy.

5. What About Those Supplements Tho?

Many intersex people need calcium and magnesium supplements. These supplements help ensure that our bones stay nice and strong, since one of the leading causes of osteoporosis is a lack of hormones.

You can check if yours does too by calling the number on your insurance card and asking.

If the answer is yes, then you just have to get your primary care physician to write you a prescription and pick them up afterwards at your pharmacy.

Pro tip: Pharmacies like Walgreens allow you to log in online and set up free mail delivery of your prescriptions. No more waiting in all those lines! Don’t have a Walgreens or CVS nearby? That’s okay, call your insurance up and ask them if they have a mail pharmacy service that you can use.

6. Speaking of Osteoporosis – Get a Bone Scan

If you do have an intersex variation that makes you susceptible to bone density complications, ask your primary care provider to write you a referral for a bone density scan.

Afterwards, consult with your doctor and figure out if you need to increase or decrease the amount of calcium and magnesium supplements and hormones that you’re taking.

7. Healing the Mind, Body, and Soul

This last set of tips are some of the most important.

As an intersex person, you’ve most likely experienced some form of trauma in your life. Many of us have gone through having part of our bodies taken away, being lied to about our bodies, and other traumatic experiences.

As such, it’s important that we have access to affordable healing options.

One method that’s been invaluable for me is free and sliding scale therapy.

You can also use the RAD Remedy website to find an LGBTQIA+ friendly therapist that’s recommended and reviewed by other queer and intersex people!

When you call a therapist to schedule an appointment, make sure to ask if they take your insurance. If they don’t, ask if they have a sliding-scale option.

If you took only one tip from this whole list, I hope it’s this one. Therapy can be so helpful for folks like us who’ve experienced trauma.

Yet, therapy isn’t always accessible or the best way to heal for everyone.

With that said, you can also use the RAD Remedy site to look up alternative healers who specialize in bodywork such as acupuncture, reiki, massage, etc.

Many people literally store trauma in the fibers of their muscles and fascia.

Some people find relief in the form of massage therapies such as cranial-sacral, rolfingand other techniques focused on releasing trauma and whole body alignment. Many intersex people I know swear by these techniques.

If you’re on a budget, ask if any of your friends are massage therapy or acupuncture students looking to fulfill their hour requirements — on you!

You can also look for healing spaces that offer sliding scale options. If you’re in Chicago, check out the amazing Chicago Women’s Health Center (they are very trans and intersex friendly!).

Another form of free therapy I take advantage of, especially when I don’t feel like leaving my house, is online yoga! Last winter, I found this Youtube channel and have found it to be really integral for mental, physical, and emotional well being.

White girl yoga not your thing? I know. Sadly, it’s hard to find other options on Youtube. But thankfully, there are projects like Black Girl in Om, which “creates space for women of color to breathe easy.”

If yoga is not your thing, be sure to check out recorded affirmations like this one on youtube. Try listening to affirmations every night before bed. I noticed negative thought patterns change almost instantly!

You’ve told one lie after another to my family and me since I was three months old. And thanks to you all, I – like millions of other intersex folks – have been forced to live two lives.

A public persona who smiled and politely answered “no” each time you asked if I had any questions, and a private self who wallowed in teary-eyed questions.

My family, like most, had no reason to question your authority. I don’t fault them for that because I understand now that they were doing the best they could with a limited amount of misleading information you gave them.

Instead, I hold you professionals – sworn to the oath, first do no harm –accountable.

Regardless of whether you had pure intentions or “didn’t have the same amount of knowledge back then”doesn’t make your lies to my family and me any more excusable.

And this unacceptable protocol reverberated throughout our lives in ways that I feel compelled to illuminate.

If I could embed one intention into this letter, it would be to bestow a sense of humility upon you.

Many of our issues could be squashed if you just removed your expert hats long enough to pay attention to our stories with humility. The lack of leaders in your field vouching for what’s right after twenty-plus years of intersex activism is offensive.

If you support our movement than I urge you to come out in opposition of the dishonest and harmful protocol that has stained your profession for the past 65 years.

Don’t underestimate the power your unique position holds, which enables you to contribute in solidarity to our movement.

Recently, the UN stated that what happens to us in healthcare environments often amounts to human rights violations.

One clinician objected that the UN, educated by intersex activists, was “antagonizing” the medical community and ultimately would prevent them from “actually understanding what’s really going on.”

I’m sharing the following list of lies you told my family and me not to shame or “antagonize” you, but because I believe in the power of storytelling. And I have hopes that my story can help prevent you all from making similar mistakes.

Lie #1: You Were Born with Cancerous Ovaries

One of the first lies my mother told me was that I was born with cancerous ovaries and that they were removed in a life-saving post-birth operation.

You instructed my parents to tell me this made-up story, and it became a root in my development.

When I began asking questions about why I couldn’t get a period or have biological children, you told my mother to just stick to the cancer story – and she did.

Sad I wouldn’t be able to have kids, confused about the reason why, and scared the cancer would return, I began to retreat inward to a world of shameful silence.

Lie #2: Your Daughter’s Gonads Will Develop Cancer

You didn’t tell my parents the same lie.

Instead of telling them I was born with cancer, you hyped the risk that my “underdeveloped ovaries” which you decisively referred to as “gonads” – and really were my undescended testes – would likely develop cancer if left intact.

You noted in the records after my gonadectomy that the tissue samples came back negative and “no term other than gonad was used.”

This manipulative tactic meant to induce willingness in scared parents is a by-product of a culture that insists, sometimes by force, that humans only come in two polar opposite varieties.

Instead of removing my undescended testes and causing a life-long dependency on hormone replacement therapy (HRT), you could have instead been honest with us and offered to monitor them annually for signs of cancer.

I know a few other Androgen Insensitive (AIS) intersex folks who still have their testes, and they wouldn’t trade them for the world.

These types of decisions about our bodies belong to us and never to you.

Lie #3: We’re Just Going to Make Your Daughter’s Clitoris a Little Smaller

In 1991, when I was four years old, you wrote in my medical records that I “underwent a clitoral resection and recession without difficulty.”

The procedure was supposed to reduce, not completely remove, my clitoris – so I foolishly held on to hope that a remnant existed, and I would find and learn how to enjoy it. That day has yet to come.

I once asked my father if the doctors at least fabricated a lie about the procedure’s health benefits. His “no” reply weighed heavy on my eardrums.

Discovering I didn’t have a clitoris seemed like the last straw, and it was then I began succumbing to the belief that because I wasn’t whole, I had nothing to offer and wasn’t deserving of other people’s love.

It’s still a daily struggle to unlearn this nonsense.

Lie #4: No One Can Tell the Difference Between You and Any Other Woman

According to you, when I was eleven, I requested “further corrective surgery” and asked whether it was an appropriate time to begin “hormone replacement therapy.”

This is odd since at that time, I didn’t know what HRT was and my previous “corrective” surgeries had been deliberately hidden from me.

Nonetheless, days before my twelfth birthday, I was again on an operating table unknowingly undergoing a vaginoplasty which attempted to fashion a more suitable and passing vagina and vulva.

Afterwards, in appointments, you repeatedly mentioned – while peering between my legs – that “no one but a doctor would be able to tell the difference between you and any other woman” while advising me “it’s not anyone else’s business but you and your future husband’s.”

It was as if you had a manual on Dealing with Hermaphrodite Kids that instructed you to first get rid of all the confusing bits and then use a heteronormative hammer to pound out what was left.

Your approach left me ashamed and afraid to share my secret with anyone.

Lie #5: You’ll Have Normal Sex One Day

At least every six months, I was pulled out of school and driven to appointments where you stressed that I was normal.

“When you get married, you’ll be able to have normal sex with your husband with one small exception: After ejaculation, a lot more will leak out because you have a blind ending vagina.”

Nothing sounded more abnormal than a blind vagina that would leak like a faucet after sex with this “husband” you constantly invoked.

At school, friends started sharing stories about getting their periods. To fit in, I began sharing stories, too, while living in constant fear of someone asking me for a pad or tampon.

I also stopped taking my HRT with me on weekend softball trips and anywhere else someone might be able to see me taking it.

After the vaginoplasty shame prevented me from exploring that region of my body, it wasn’t until the first time I attempted to have “normal”sex with a boyfriend in high school that I learned just how wrong you were.

I’m not normal. No one is. And that’s okay.

Lie# 6: We Just Need to Take a Look

Once the pain from “normal” sex subsided after a few weeks, I waited for pleasure to arrive like one waits for a train that derailed miles before reaching their stop.

I went into denial in order to cope with the reality that sex equaled pain, and I was faking every second of it.

Disassociating after hearing the command “we just need to take a look”, before you lifted my shirt and pulled down my jeans, prepared me for when I also needed to escape my numb body during “normal” sex.

The way you took control of my body sometimes made it necessary to deny its existence in order to keep existing.

Lie #7: I Would Never Lie to You – You Can Trust Me

It’s hard to trust people when “safe”people like my parents and physicians lied to me.

When I was seventeen, you wrote that psychiatrically, I was “normal” and otherwise a “well developed young lady in no acute distress” who was “not yet sexually active.”

The reality was that my life was crashing all around me – and I was having sex, but I didn’t trust anyone enough to disclose that information.

In their quest to have me accept my assigned sex and gender, doctors focused on my body and ignored the emotional aspects of my development.

Instead, you should have been checking in on things that really matter in relationship-building – like whether or not I was able to share my emotions or establish trust with others.

You only had me see a therapist once.

I stared at the same curve in the wood grain of his desk not speaking or meeting his eyes for the entire session.

For future reference, this is usually what’s referred to as a red flag.

Lie #8: You’re One in a Million, Kid

Another lie you told me was that I would never meet anyone else like me because being born with cancer in my ovaries onlyhappened once in a million births.

This “knowledge,”coupled with being terrified to tell anyone the truth about my non-existent period and vaginal surgery, only added to the isolation.

There’s a slippery slope between feeling alone and hating yourself made easier by growing up in a world that has no representation of your experience anywhere.

Thankfully, this isn’t the case any longer as I now know that between 0.05% and 1.7% of the population was born intersex. The upper estimate is similar to the percentage of people born with red hair!

Thanks to early intersex activism combined with the advent of the Internet, findingcommunity – while still challenging – ismore possible than ever before.

Lie #9: We Did What We Thought Was Best for You at the Time

My mother once said, “If God came down to me and said, ‘You have one wish, what will it be?’ It would be to start all over again with you.”

If I could rewind life and start all over again, I would have instead replied “yes” when you asked if I had any questions.

I would have asked you things like: Is any of this even necessary? How do you know I’ll marry someone and it will be a man? Are there other ways to experience intimacy with partners that don’t necessitate a vaginoplasty? Why did you take away my clitoris?

Ultimately, I would ask for truth because I something tells me that working to accept the body I was born with would have been less traumatic then attempting to heal this fragmented one.

Hopefully it’s clear that my goal is not to “antagonize” nor to placate. Instead, it’s to hold you accountable while helping you recognize the injustice intersex people have suffered at your hands.

I’m asking you to go beyond doing no harm and join us in our movement to achieve the right to bodily autonomy for all – because as Sean Saifa Wall reminds us, “we will win.”

Intersex activists are carving the path every day, and you just have to decide if you’ll trek it with us.